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Carers UK Forum • Can we care too much?
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Can we care too much?

Posted: Fri Aug 26, 2011 1:14 pm
by Scally

[quote]Julie Fernandez, a disabled actor best known for her role in The Office as the 'Woman in a Wheelchair' explores the complex relationship between disabled child and parent carer.

Julie has brittle bone disease and Julie's mother cared for her through more than seventy operations and considerable pain. Always strict, she made Julie help with housework even when encased in full body plaster, fought to get her into a boarding school and encouraged her independence. So Julie was not prepared for what happened when she left home to get married. For several months her mother wouldn't speak to her.

Inspired by her experience Julie undertakes a personal journey into what happens when parents care too much? Funny, frank and very challenging she talks to parents and their adult dependent children when as one mother put it 'two become one.'

She explores the different issues for parents of children with physical disabilities compared to those with learning difficulties. Jenny's story is typical]

Re: Can we care too much?

Posted: Fri Aug 26, 2011 4:27 pm
by Lazydaisy
A Mother's Promise(to her child with type 1 Diabetes).

She walks down the hallway in silence so deep,

Keeping watch over him, as her little one sleeps.

With meter in hand, she opens his door,

Making sure not to wake him as she crosses the floor.

She sits on his bedside and brushes his hair,

As he dreams of shooting baskets, without a 'D' care.

She holds his hand softly; his fingers so small,

As she watches and wonders why 'D' came to call.

While she watches him sleeping, so peaceful and warm,

The forces inside him fight a constant 'D' storm.

Will he ever be free of shots and blood testing?

She sits and she wonders as she watches him resting.

The beep of the meter breaks the silence of the night,

A small drop of blood tells if everything's right.

The seconds count down to the final display,

I hate this damn meter; I want to throw it away.

The number is fine, one down, a lifetime to go,

As he turns in his sleep, will he ever know?

Why does this 'D' happen to someone so small?

My son is my hero, but my baby most of all.

She turns at his doorway, looking back one more time,

It's a nightly routine of the very worst kind.

She walks down the hallway and time passes by,

As she sits in dark silence and quietly cries.

I have to stay strong, and for him I will fight,

We'll battle this 'D' with all of our might.

I'll teach him to master and conquer this foe,

This 'D' will not stop him, I promised him so.

A poem in memory of the author, for all children with diabetes.

A Mother's Promise was written by Gary Hempleman. He had diabetes for 35

years and passed away December 14, 2002 at age 45.

I was told to stand back from my younger son with type 1 Diabetes. Five months later he was dead. I wish I had gone with my heart,and continued doing all of the above, as I had done for over 20 years.Supporting and fighting for him. As a parent, my children mean the world;without them there would be no world, for me.

Re: Can we care too much?

Posted: Fri Aug 26, 2011 7:54 pm
by ladybird
((((LD)))). You have lived through most parents worst nightmare and still can find it within yourself to post on here and give your support to others.

You are the perfect example that shows no, you never can care too much. xx

Re: Can we care too much?

Posted: Fri Aug 26, 2011 10:13 pm
by Tracey
(( LD ))

So sad, every parents worst nightmare, but you still offer support xxx

Re: Can we care too much?

Posted: Sat Aug 27, 2011 7:00 pm
by blueeyes
I wrote this poem many years ago when my daughter was a two year old Bundle of mischief,

A Mothers Prayer

Dear Gentle, loving child of mine
With eyes of blue
Hair golden and fine,
Just now your world
is a giant playground
With new sights to be seen
New treasures to be found.
Filled with curious wonder
You hurry home
with a rose, a leaf,
a shell or a stone.
I sigh when I think
that in a few years
her world will be filled
with problems and fears.
So please grant, dear Lord
That I may be
Close by whenever
my child needs me
to tend a hurt
or mend a broken heart
and to give her the courage
to make a fresh start.

No , I don't think you can ever care too much, especially when it's your child.

Regards Blue eyes

Re: Can we care too much?

Posted: Mon Aug 29, 2011 12:43 am
by Scally
So, when does care become suffocation? When does love go too far and become restriction? And when do we push too far and expose our children to unreasonable risk? Who decides?
I've been asking myself these questions a lot this week. Well, my son is backpacking around Finland with an older teenager, he is only just 17, and I'm acutely aware of the fact that some people might say I'm pushing him too fast, too early, and also that it might all go belly up. Yet, so far, all seems to be going well, they are flying home tommorrow night, and anyway I was also travelling across Europe in my mid-teens. But he does have a very significant learning disability, Downs Syndrome, not to be sneezed at. So: do we throw them in the deep end, or wrap them in cotton wool? And how do we decide when to push, and when to protect?

Re: Can we care too much?

Posted: Mon Aug 29, 2011 11:57 am
by Lazydaisy
I admire your courage,your son is the one having a wonderful time, you are the one biting your nails while he has a wonderful time.
My son's Diabetes is more of a problem than his Downs Syndrome. We need staff to care for him who understand his Diabetes needs. Social Services are looking at independent living in the future for him,but their idea is that he can share a flat with another person who has a Learning disability and diabetes. Never mind whether they get on together or not!
He is due to start bereavement counselling soon, but in the run-up to this, I wasn't happy about it. It is run on a group basis,and the others have all lost a parent.(they also have to take a Carer/care Worker with them). When I asked what the aim was, I was told,"it is to normalise death."There is NO normal to losing your brother when he is just 21 years old. They will be making a memory book also.My son is far beyond this. His memories are in everyday living.I really don't believe it is the right thing for him, and I have also asked my daughter, who is the only other person in the world who sees it from his point of view.(I have never lost a sibling).I am feeling as though my son is being belittled (by professional staff)for having a learning disability.There is also no confidentiality to this,and I believe he should be allowed privacy when he is talking about his innermost feelings. His comprehension with much in life is way beyond what "professionals" see.
My son stays with his sister often,and they go out with her toddler, walking in the woods and studying nature, which he loves. Binoculars and birding book and he is happy.I have emailed the National Parks several times to ask about voluntary work, but have never heard back from them.

Re: Can we care too much?

Posted: Mon Aug 29, 2011 3:54 pm
by Nilla
lazyD and Bluebird those poems are very touching!

Sarah has a friend who is a typical girl shes 13 and doing all the things a 13 year old girl should be doing, shes asked if Sarah can sleep at hers one night, half of me thinks I have to let her go but the other is saying no what if they drink, what if there is boys there etc etc. Also her bedtime routine is so rigid would she cope?

Re: Can we care too much?

Posted: Mon Aug 29, 2011 4:26 pm
by Sassy
I don't think it's possible to "care too much" after all, some of us are carers who either care for someone with or indeed have a potentially life threatening condition ourselves. There are times where even I need to have my caree care for me since I have asthma and a list of allergies a mile long (Even now, new allergens are constantly coming to light).

Should either of us have an attack or allregic reaction, things can turn out to be fatal in a very short space of time, so not only do we need to be aware of each other but we need others to be aware of us and our conditions, too.

As a lifetime sufferer of asthma with a long list of allergies, I've come to realise what is best for me and what I need to do to get through my life with my conditions... sure, I got some funny looks on 14th February 2004 when my caree proposed to me because I insisted on having a ring that is a full size too big for me, but it has been useful in times that have followed because I've managed to remove rings that would otherwise have been cut from my finger.

I'm also in a great position to advise others on what to do when they are having a rough ride with their asthma or allergies - and this is something I have done in the past and will continue to do in the future.

Re: Can we care too much?

Posted: Mon Aug 29, 2011 4:30 pm
by Sparklingtechie
On an emotive side I can honestly say there is no such thing as caring too much. On a practical side I have had to learn just recently that yes there is. I had to learn to allow my disabled son to have the freedom to walk about and do things in an effort to keep this family functioning as a unit. Even though my idea was not to restrict him or keep him prisoner I viewed it as keeping him safe, away from harmful things he could not deal with as a child but more specifically as a disabled child. It was my view that needed altering and to care for him I had to 'let him go' as it were. To learn, to become independant and by doing so be safe.